Life is hard

Life is hard, and it does not get easier as we age. With an incurable, progressive disease like Parkinson’s there are bound to be moments with little or nothing to look forward to, which begs the question, why continue?

I remember when I began asking that question in 2014, more as a hypothetical as I was mostly happy at the time. It was just before my deep brain stimulation (DBS) surgery, on the steep precipice of decline nine years after my Parkinson’s diagnosis. But the real possibility of gaining a renewed lease on life because of DBS existed back then. Eight and a half years later, there is no such “hail Mary” play for me to delay the inevitable descent into stillness.

What is it that keeps me from constant depression? Life could get far worse as Parkinson’s progresses, and it probably will. So why stick around?

Seventeen years ago, just months after my diagnosis, with my pilot’s license rescinded, my job gone, and no idea what would happen next, I promised myself that I would take advantage of whatever time and capability the disease left me. The only certainty before me was pain, discomfort, and death. Fuck Parkinson’s.

Six months after diagnosis, I was skippering our new boat far into Canadian waters with my beautiful wife and children. Since then, I’ve tried to squeeze every last bit of life from chance and circumstance.

My most meaningful life experiences have been born from the fires of Parkinson’s threatened constraint, allowing me to grow and love without reservation. Yes, “Fuck Parkinson’s,” I say, even as I embrace the disease. Without conspicuous challenge stretching our core prospects, life tends to pass us by.

It makes me smile. Hey, Parkinson’s—you’re the best thing to ever happen to me. What do you have to say to that?

Delightfully depressed

A few select songs incapacitate with their haunting beauty, stranding me in a netherworld of delightful depression, frozen in a timeless dimension of emotion. Lola, by the Kinks, has always been one of these songs for me. These compositions evoke a purity of joyful pain that overwhelms, losing me in a cathartic confusion of authenticity that I’ve only recently recognized as the sharing of unconditional love between unfamiliar souls.

This experience is not today’s fairy tale notion of romantic love that we’ve come to believe reflects truth. It is far more potent a sensation, bringing one to their knees in the moment’s ecstasy, without regard for sex or society’s veiled ingratitude for the gift of life. I find myself encountering this phenomenon more frequently, the greater my Parkinson’s induced incapacity.

Usually precipitated with a shared look into the eyes of a stranger in passing, it infuses me with an immediate need to cry, deeply, not in sorrowful wails of expectation, but in a tsunami of clarity beyond human convention, unknowable energy coursing through me with all the beauty that life brings. With the immutable transience of grace, welcomed in the glory of all that is, we share through infinity’s moment a glimpse of the ultimate wisdom of the eternal.

Preparing to land

Trying not to squirm in the 737’s exit row, I struggle to avoid bringing attention to my condition and risk losing the relative comfort of extra legroom. As I stare at the boarding passengers, no earth-shattering revelations pay visitation. Carefully reviewing the emergency exit card, I weigh the value of being a former airline pilot with emergency exit training with that of the average fully physically capable passenger.

If I am fortunate enough to travel solo again, the overarching lesson is that I grow progressively weaker each day away from home. Sleep is as elusive as the disease is fair, unrecognizable in form or effect. Each successive day brings a progressively worsening brain fog, less ability to speak cogently for much of the day, and less independence. I thought Parkinson’s would behave similarly to home if given sufficient attention. I was wrong.

The effectiveness of my deep brain stimulation (dbs) system is waning. I’ve assumed that as dbs loses effectiveness, previously dbs-masked symptoms will present unusually quickly. My assumption could be faulty. It is a question for my neurologist next appointment, but it is growing apparent that the current rapid rate of disease progression could also continue.

I know where the finish line of this race lies; the desired speed and direction to traverse the course are still mysterious, however, wreaking emotional wreckage with haphazard intent. Gently, with heart’s still longing to bracket likely corners of retribution, my future becomes apparent with a sense of serendipity ordinarily reserved for dreams and flow-states of unusual grace. And then, in an enduring spectacle of confusion, it joins with the grand mystery, penetrating form with the ease of the ethereal.

Home is gradually coming into view.

Coexisting realities

The deep brain stimulator surgically implanted in 2014 has served me well, but its effectiveness wanes each day. A persistent brain fog hounds me, often leaving imagination as my only reliable companion in adventures of memory.

Today, I traveled back four years to share the water—from the safety of an underwater cage—with Great White sharks. Rounding off each day of diving, an informal tutorial on the behavior of this apex predator would be held in the vessel’s common area.

When two Great Whites meet while hunting, the pair will swim alongside each other to determine which shark is longer, with the “winning” fish continuing to predate in the disputed waters. The smaller shark moves to other hunting grounds, bowing peacefully out of the contest.

But occasionally, the two fish skirmish for reasons unknown to me, leaving many Great Whites scarred from the violent encounters. These physical anomalies serve as the primary basis for identifying the approximately 400 Great Whites living seasonally in the waters off Guadalupe Island, Mexico.

While peaceful collaboration appears to be their initial conflict resolution strategy, bite scars lasting the animal’s lifetime leave the impression that violence is the sharks’ reaction of choice. It can seem that there are two valid, coexisting realities, and perhaps there are.

Allowing nature’s clarity to relax the mind enlivens the spirit. Breathe deeply while strolling in winding woods or swimming circles on a quiet ocean. Animate the soul with the possibility of eternal truth, intertwined in the mutuality of authentic witness, permitting the unseen to appear.

Fortuitous circumstance–a PD update

Before my deep brain stimulation (DBS) surgery in 2014, despite significantly increased Parkinson’s symptoms, I was overall happy and at peace with life. I also had a deep-seated conviction that DBS would change everything, including my sense of spiritual well-being. Physical happiness trumped spiritual well-being, at least at this early stage, however. It was reassuring to know that DBS offered a relatively good chance of substantially improving my daily life, if only temporarily,

Now, seven years later, it is clear that Parkinson’s has overcome much of the positive influence of DBS, and monthly—if not weekly—disease progression is becoming more evident. The network of DBS brain wires still helps reduce some symptoms, and those symptoms that have returned are not identical to those experienced pre-DBS. Notably, DBS is still effective in mitigating the worst of my painful right-side dystonia.

On the other side of the ledger, my speech is arguably worse than before brain surgery. Unintelligible slurring is becoming more common by mid-morning, a challenging symptom to predict. I had forgotten the mini nightmare of a sound mind trapped in a body that could only produce the appearance of severe degradation. The required increase in my daily intake of Levodopa, which acts as artificial dopamine for a Parkinson’s patient, allows me to move but also causes the wild flailing and uncontrollable, painful writhing of dyskinesia.

Mornings are now the only reliable time for me to drive safely. My activities are limited by early afternoon to reading or watching movies for the most part, usually while fighting to break out of frustrating brain fog. By mid-afternoon, disease-induced fatigue, exacerbated by the morning battles and medication side effects, is overwhelming.

It is here when I am at my physically weakest and unable to think clearly, when anxiety’s gnawing horror rears up in psychological surprise attacks, that my situation borders on the untenable. It is disconcerting not being able to access the comfort of a deep breath. Having accepted the disease’s eventual outcome without reservation, it is the road getting there that can appear impossibly daunting.

Inevitably, when this happens—which is at least once most days—I remind myself to walk outside, to stare at a flower or spider web or the cloud-filled sky, in frightened silence until I can replenish that foundational part of me, the essence of my being, my soul. 

A foolishly giddy smile invariably crosses my lips when this happens as I revel in the cosmic joke, an improbable artifact of life’s guileless beauty. Unadorned by the brutal conveyances that surround, I reach a moment of surrender, laugh as my chest finally fills with breath, and marvel at life’s great circle of fortuitous circumstance, grateful for the day.

Round two (or was that 200?)

Life sometimes travels in circles, compelling us to confront similar challenges over and over. Maybe the core problem with breaking free from these recurring themes is that the goal—whether consciously or unconsciously considered—has not been met; perhaps the necessary life lesson has not yet been experienced.

Parkinson’s progression serves as a good example. Even before successful Deep Brain Stimulation (DBS) surgery, I knew that my increased capabilities would be temporary, waiting for who knows what to ignite the progressive nature of my disease once again.

It has begun. Parkinson’s has shrugged off the positive impact of DBS and is back to dragging me in a familiar direction, back to that feeling of an immobile, isolated helplessness. So, where is my power?

The medical bag of tricks is empty, with more medication the only option is to salvage a few scattered hours of reasonably stable mind and body from the day, for now. Old lessons are relearned, tactics are refurbished for nuanced differences. I prepare myself for the inevitable.

And here lies my power: the acceptance of what is to come in all its twisted beauty. I am not my body or my mind. Ultimately, I am all that I need. At the core of my being, smiling at life in all its colors of deceit, I am. Come and get me.

Losing my mind

As we grow older, it becomes apparent that losing one’s mind becomes both the greatest fear and the only goal worth pursuing. No associated numbers dwell in this no-man’s land of life’s journey: no specific age, degree of education, no amount of effort or time. The realization comes differently to all of us, and for some—I imagine—it comes not at all.

Consciousness, the human concept of the mind, of thinking in some fashion, metastasizes with life experience into a misshapen lump of contradiction. What we pursue does not bring happiness, and neither does what we accept, at least not on a conscious level. But what if happiness is merely the bait, the draw toward a manner of thinking that we are unable to comprehend intellectually, that rebels against the fiber of who and what our society has taught us to value?

The release of physiologic drugs, such as Dopamine—which is near and dear to my heart because of Parkinson’s—signal the positive reinforcement that keeps a desperate humanity looking in all the wrong places, or so it appears. But maybe the direction of the search is unimportant. There is no permanence in anything, especially in happiness. Might it be the process of challenge and reflection that yields reward, that eventually heralds in an elusive contentment, only discovered through an abrogation of a lifetime of facts and figures, of “losing one’s mind”?

Happiness encourages the weary explorer forward while being mistaken by the mind for the desired end state. Embrace your personal challenge. Hug it so tight as to make you brave enough to lose your mind in the process. Maybe all that is required of life is to continue on the journey.

Boldly going nowhere

Although there is a litany of possible Parkinson’s disease symptoms, ranging from dystonia to insomnia to depression and muscular rigidity, in my experience there is one insidiously consistent effect of the malady: a lingering apathetic malaise. This ennui, characterized by a near universal lack of motivation to do anything, has stuck with me on good days and bad, both before and after DBS surgery, and in times of general happiness and those of deep depression.

Parkinson’s makes virtually everything harder, which certainly doesn’t help. Most of the physical activities that used to be fun either no longer resonate or are outside a comfortable range of movement, at least for any length of time. When it takes tremendous effort just to make it out the door and into the car, this can lead to a self imposed isolation and loneliness. Because it hurts wrists, shoulders, and neck just to hold a book for very long or to work at the computer, one is left with a lot of time pacing the house and reflecting on life.

I’ve come to honor this time as best I can, understanding that there is a life of events, thoughts, and feelings to ponder, not with a dull memory’s illusory command of regret or self-satisfied victory, but with mind’s eye squinting in search of a sliver of insight. In frequent times of extreme boredom, I hold out hope for the permanency of an ever elusive peace, as if merely wishing for an ordered state of affairs from a disordered mind and soul might bring it closer.

Still, I jumble ahead to the circular reflection of a lonely man’s stroll into oblivion, boldly going nowhere.

“Motion’s coming on”

Professional aviation uses high-tech flight simulators to train pilots. From the outside, these boxy contraptions hardly look flight-worthy, mounted on multiple steel hydraulic powered pedestals that move the simulator to mimic flight conditions down to the smallest sensation. Inside, the boxy look is soon forgotten as the flight crew straps in to the perfect replica of an aircraft, including a near 360-degree visual screen.

Signaling the imminent start of a training session, the words, “Motion’s coming on” warns the aircrew as a matter of safety, as the hydraulics are engaged and pilots brace in case a system turn-on hiccup causes an uncommanded violent jerk.

At first, the simulator motion makes it feel like you are sitting on the head of a pin, with the slightest shift in aircraft controls causing an exaggerated effect. But that goes away quickly, and in no time the pilot can almost forget that his total concentration is on a false situation. It’s not uncommon to have a pilot finish a particularly difficult simulator shaking from the very real stress of the fake scenario.

In a way, most lives are spent teeing up on a personal life simulator, precariously balanced on a perch of falsehoods, experiencing all the stress and fear of life without actually living, or the benefit of a warning phrase like, “motion’s coming on.”

It might take the epiphany of tragedy to see past the facade of convention. The sensation is not comfortable, the realization that the Emperor has no clothes, that the underpinnings of entire lives have been held up by false gods of materialism.

Living a simulated existence can be comfortable for a while, but we all must eventually face the simple reality of death. This is just a humble reminder that life’s “motion is on.”

The most unlikely of places.

Personal identity is commonly viewed as an externally driven phenomenon that offers no individual recourse, a conglomeration of inputs from the superficial to the soulful that describe a person’s essence. Occupation-based assessments are a good example. The first topic of most conversations between the newly acquainted is what one does for a living. The answer, tellingly, is usually framed as, “I am a blank.” Can these four words come anywhere close to defining any human being?

Of course not, yet we not only allow such self identification, we inadvertently encourage such simplistic descriptions of the indescribable. The greater danger is that this can lead to actually believing we are bound by the limits of a job, societal role, or illness for that matter.

Small talk is, in my opinion, a celebration of the superficial; a denigration of personal meaning and power. We are creatures of habit. How we act gradually defines who we are to the only person that matters: ourselves. We start to believe in single words, such as generous or miserly. And that leaves little power in the hands of the individual when a negative personality trait becomes unbalanced, turning an opportunity for insightful change into never ending self chastisement and helplessness.

Tomorrow is another day, but why wait? Identity is our living masterpiece. Fill the canvas with your personal colors, creating the beauty that resides in the contrasts of your travels, often in the most unlikely of places.